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By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

These stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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By CaptainCardio on 2/12/2013 9:56 AM
I was born with coarctation of the aorta and patent ductus (PDA) in 1959. I only know the beginning story from my mom, who is a very persistent nurse. She says that she always knew there was something wrong with me but doctors would not listen until I was very sick. Luckily they finally found someone who did help them and then I had surgery.
By CaptainCardio on 1/16/2013 2:19 PM
Last year, I had to have open heart surgery for the second time in life. My first was when I was a day old, and 30 years later I was told that I need a valve replacement. I never thought that I would need another surgery in my life. I was also told that I had an ascending aorta which at this time doesn't need to be fixed. This is so hard to deal with knowing that I have to get this done in the future and it’s been seven months since my surgery for the valve replacement. I hope that once I'm done with cardiac rehab I can try go back to my life.
By CaptainCardio on 1/16/2013 11:12 AM

A fall out of bed when I was four years old led to an ER visit to evaluate a potential concussion. That internist turned to my mother and said,” Tell me about your daughter's heart." And thus we had the first indication that I was put together a little differently.

I have Shone's syndrome - my coarcted aorta was repaired shortly after that ER visit, my bicuspid aortic semilunar valve isn't standard, but works well enough as do the too-small muscles on my mitral valve. I've also had valve-sparing aortic root replacement when my aortic dilation reached a point that the risks of rupture outweighed the risks of surgery.

By CaptainCardio on 1/16/2013 10:57 AM
Bicuspid Aortic Valve - In 1988, at the age of 24, I had just taken my first job after graduating from Indiana University. I wasn’t feeling well, and made an appointment with a doctor whom I had never seen before. During that appointment, he asked about my murmur. I knew from all of the physicals I had for sports, school and summer camps that I did not have one...and I told him so. Well...over the next 10 years, I met with an Internal Medicine Doctor quarterly and with my Cardiologist yearly. By 1988, the murmur was cool enough to cause doctors to call other doctors over to listen to it. When asked if I had shortness of breath, I would say, “I think so as I really breathe hard after bicycling up big hills.” Needless to say, they always wrote “he claims to be asymptomatic.”
By CaptainCardio on 12/3/2012 1:21 PM

To give you a little history about me: Until 8th grade I thought I was a totally normal kid, played sports etc. but I needed a physical for an allstar football team I was selected for, and we discovered that I was born with PDA (Patent Ductus Arteriosus) - this is a little valve that closes when you take your first breath as a newborn. My PDA never closed and mixed blue and red blood in my heart.

I also had a Bicuspid Aortic Valve (2 leaflets instead of 3), which started leaking and in turn enlarged my Left Ventricle. This combination was diagnosed and I was sent to CHOP in 1989ish?

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